Telling Others You Have Chronic Kidney Disease

As a patient with chronic kidney disease (CKD), you’ll be highly involved in your treatment. But this doesn’t mean you’ll be doing it alone. A healthcare team—your kidney doctor (nephrologist), a renal nurse, a dietitian, a patient care technician, a social worker and others—will be there to help. You’ll need support on the home front as well. There are people in your life who you will want to tell about your condition: your partner, family, friends and co-workers. Starting a conversation about your health and maintaining ongoing communication about your condition doesn’t have to be difficult. Here are some guidelines to help you tell the people in your life about your kidney disease.

Informing yourself

It’s easier to talk about a subject when you are well informed. This is especially true for chronic kidney disease. Your best source of information about kidney disease and its treatment is your healthcare team. They can address your concerns and answer any questions you have. You can also do your own research about CKD. Your public library will have books and reference materials you can use. Kidney specific websites on the Internet (such as DaVita.com) can provide valuable medical and lifestyle information, at any time of the day or night. Learning about CKD will give you confidence to talk about your condition.

Informing your partner

Your partner should know about your condition as soon as possible. If your partner has questions you are not able to answer, bring them to your next doctor’s appointment. They can hear first hand about CKD and its treatment. Some patients prefer having their partner accompany them to medical appointments and the initial treatment sessions. Having a loving advocate by your side can help you feel positive and confident. This also gives your partner the opportunity to meet your healthcare team and bring up any concerns or questions they may have.

Whether it’s accompanying you to appointments, helping with home dialysis treatments or planning meals, your partner is a critical member of your healthcare team. You will be working closely together. Effective teamwork relies on good communication. You and your partner will need to know how each of you feels, both physically and emotionally. This emotional awareness is important in keeping your relationship healthy.

Your children

If you have children, they should be told as much about your disease as they can understand. Small children are aware of changes in the household and look to their parents for cues on how to react. Your condition is only as scary to a child as you let it be. This is especially important if you opt for treatment at home, such as peritoneal dialysis or home hemodialysis. Children are naturally curious. It is important to answer their questions and concerns as honestly and simply as you can. If you have a positive attitude, your children should too.

Although adult children can understand more about the disease and its treatment, they may have stronger emotional reactions. They may have fears based on what they’ve heard about dialysis. Being informed about your condition will help you answer any concerns they have. Once your children see you are feeling better and are more active, they will see dialysis in a positive light.

Informing family and friends

Some patients feel more comfortable letting other family members and friends know about their disease at a much later stage. Others feel it is a private matter, and should only be shared with those on a “need-to-know” basis. This is a personal choice.

Your treatment schedule may interrupt some regular social gatherings or leisure time, but it doesn’t mean you will have to give them up entirely. Don’t let your friends think you are no longer interested or incapable of participating in activities you enjoyed before your diagnosis. Keep the lines of communication open. Depending on your condition, there may be some activities your doctor will advise against. If you are used to doing these things with family and friends, let them know about your disease and ask them to explore other interests you can enjoy together. This could open you up to new and fun experiences.

Informing your workplace

For many of us, work plays an important role in our lives. It is our source of financial livelihood. You may be worried how your supervisor and co-workers will react if they discover you have a chronic kidney disease. Again, whom you tell is a personal decision. But if your job involves activities that leave you feeling excessively tired or strained, your supervisors should know so they can adjust your workload until you are feeling better. It is also wise to talk to your human resource department. They are a valuable source of information regarding sick leave and health insurance.

If you are on dialysis, make sure to talk with your social worker. A social worker can provide tips on coping, communicating with others about your condition, insurance issues and your rights in the workplace.

Communication is an important aspect in coping with chronic kidney disease. Your privacy is also important. Remember, whomever you decide to tell, talking about your condition allows people to offer you their love and support.

If you would like to locate a DaVita center near you, go to Find a Center on DaVita.com or call a DaVita Guest Services Specialist toll free at 1-800-244-0680 with questions regarding insurance and information on dialyzing at a DaVita center.